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Are you saying mom's doctor doesn't spend time with mom/you explaining things and answering questions and concerns?
Personally, I have come to a place in my life where, if I see a doctor who strolls in into the exam room, doesn't make eye contact, and spends only 30 seconds with me, having obviously already made up his/her mind what the diagnosis is and what the treatment will be based solely on what's in my chart and without the courtesy of allowing me to speak, I "fire" that doctor and find another one. I don't think medical practice should be a "churn and burn" sort of business.
If you don't want to "fire" mom's doctor, then be forceful with your tone of voice the next time you see the doc. If you don't speak up and tell him/her you need more information, the doc is going to assume everything is copacetic. A simple "Doctor, I have some questions I would like you to answer" firmly, and without an apologetic tone might work. You might want to write them down beforehand, so you're not fumbling around trying to "find your words" so to speak.
The doctor works for your mom and for you and should be willing to take whatever time is necessary to explain whatever it is you need to be explained.
My mom has vascular dementia. It does mimic Alzheimer's but can have a slower decline period than actual Alzheimer's. At least, that's been our experience. We're 14-ish years into mom first being diagnosed. Thank God we've had an excellent neurologist on board from day 1 who is an expert in most types of dementia-related issues but especially vascular and Alzheimer's. He is constantly attending seminars and keeping updated on what is new/different in that venue.
For us, it was trial and error in regards to medications, behavior challenges and more. Thankfully, my sister and I both have an excellent (but a bit warped!) sense of humor that more than helps us get through each day. With the help of the doctor, we were finally able to get mom on a great path of meds, keeping hydrated, etc. We also learned that we take each minute, hour, day as it comes and always stay in mom's moment, whatever that may be at the time.
Mom recently fell which precipitated us moving her into a great nursing home. They have a step-down unit in the same facility for when mom needs full care. The staff there -- right down to the cleaning staff! -- are excellent and mom has flourished in their care. She's very content and loves it there (as best we can tell).
Keep doing research and please find a neurologist who has actual hands-on knowledge of dementia-related diseases. And please know that you cannot take care of her all by yourself no matter how much you think you can. Burnout is real and, if you're not healthy and take care of yourself, you won't be able to take care of others. Best wishes to you and big hugs -- it's an awful path for not only our LOs with this dreaded disease, but it also takes an horrendous toll on the caregiver(s).
Vascular dementia normally has a 5 year life span to it and a quicker decline period than Alzheimer's, in reality. If your mother is 14 years in, is her excellent neurologist certain it's vascular dementia and not Alzheimer's which has a MUCH longer life span to it? More like 20 years? My mother had VD and lasted just under 6 years; her sister had AD and lasted around 13 years.
Most doctors aren't very helpful or even that knowledgeable about dementia or how to deal with it. My mother received the best treatment from the NP and PA at her PCPs practice because these gals came into the Memory Care Assisted Living daily and visited with the residents, seeing firsthand what the disease looks like and acts like. Then talking with us family members and getting feedback about changes with the elders and needs for med adjustments. It's all trial and error and YOU learning as much as possible, as I did. That's the truth.
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here: https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
The 36 Hour Day is another great reference type book to keep handy and a good tool to have in your toolbox. The book answers lots of day to day questions that crop up.
Support forums such as this and the one at Alz.org are excellent for sharing your knowledge and learning from others experiences. Teepa Snow videos on YouTube are also excellent as she provides great insight and tips into handling elders with dementia and AD. Don't fuss over what words are used to describe a broken brain either....Alzheimer's, dementia, etc.....the symptoms and behaviors If all similar and are all treated the same, except for maybe which meds are prescribed, if any. My mom only took Ativan for agitation with Sundowning, Wellbutrin for depression, and meds for nerve pain unrelated to dementia. Nothing helps with Memory loss.
Please tell me about nerve pain with dementia? I had not read or seen that anywhere in my research. My husband is diagnosed with vascular dementia and parkinsonism. So far his mind is good but he suffers terribly from nerve damage from shingles 2 years ago. Nothing so far has been any help to him except spinal stimulation which has now failed. I think he could do so much better if he weren't constantly in severe pain. The doctors here are terribly inadequate it seems to me. We've tried CBD, cannabis, lyrica, essential oils, exercise and Xanax. Nothing but temporary small amount of relief. Thank you so much for your reply. I just need to know what I'm up against.
I'm sorry that your doctor is not providing enough information. Maybe it's because there is so little to be done about dementia. I agree with notgoodenough that you should "vote with your feet" and find another doctor, maybe a neurologist, who will be more compassionate and knowledgable.
There are plenty of books and videos that will help educate you about dementia. One is Teepa Snow videos on YouTube. And forums like this one.
I bookmarked these sites because I'm always on the lookout for info related to vascular dementia, especially dementia that isn't necessarily the aftermath of a severe stroke, it can be frustrating because the primary focus of almost all dementia resources is Alzheimer's.
"it can be frustrating because the primary focus of almost all dementia resources is Alzheimer's".
Agree.
In fact, I believed dementia was Alzheimer's Disease until it was explained Dementia was an UMBRELLA term: covering many types of dementia - of which Alz is one (most common one).
If this is a GP they know a little about everything but not enough where a specialty is needed. Mom should be seeing a neurologist if you are not already.
BioMom, others have written about the frustration of Dr diagnoses etc.
Can I stray a bit & ask if Mom is living with you, with others or alone?
This would be so we can offer some practical strategies to help you. In-depth dx or not, avoiding burnout as the primary caregiver should be a top priority.
Regarding Mom's denial - can I add my take: if part of the brain is effected (like a few lights flickering or going off) then the brain cannot 'see' there is any problem. This denial is actually *lack of insight*. Medical term is 'Anosognosia'.
I will add some links for you if you are interested to read up but basically, if she has lost reasoning power, you will need to be the one making the judgement calls & decisons. For her own safety.
Are you POA? Is anyone? What you mention in your profile is a bit on the frightening side if you ask me. She should not be living alone. She should not be driving. Her doctor should have given you and her a written statement to that effect. With Vascular dementia you never know when there will be another small stroke that could do more damage to areas of her brain that will effect driving, coordination, knowing she left the stove on or the water running. Or a host of other things. If there is no one that has POA you or someone should become her Guardian. Unless she is cognizant enough when you go to an attorney, if he has a conversation with her and se seems cognizant then they will do POA, but if the attorney feels that she is not cognizant they will not do POA.
My Husband was diagnosed with Alzheimer's but I think he also had Vascular dementia. the decline with Alzheimer's is more gradual in most cases. Vascular dementia can have very sudden declines. My husband went from walking one day to not being able to walk the next. There were other "over night" changes/ declines that he had. So you never know what is going to happen when. It all depends on what part of the brain is effected by the next mini stroke.
I found great success writing to a doctor a few days in advance of an appointment with a list of my questions and most importantly, telling him I KNOW NOTHING ABOUT THIS SUBJECT, SO EXPLAIN IT LIKE I KNOW NOTHING ON THE SUBJECT.
I had to resort to this technique with my first child's pediatrician. I'd never known a baby until I had one of my own, so I had to tell him in writing that he needed to assume I knew nothing, because I didn't. He was brusque and in and out so quickly I was often left in tears of frustration.
Fortunately, he took my letter to heart and kept that note at the top of my daughter's chart, and our relationship improved immensely when he slowed down and started to listen rather than dictate.
I think doctors often forget that their patients are on the ground floor of knowledge while they're in the penthouse. They can't remember that they need to start at a very basic level when explaining things. Giving them a head's up and reminding them that you won't be offended if they dumb it down for you is a good tactic.
When doctor says "vascular dementia" think stroke-like issues of poor blood supply to the brain. Ask for a referral to a neurologist - a doctor that specializes in medical issues of the brain - for further evaluation, treatment, and explanations.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
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I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Personally, I have come to a place in my life where, if I see a doctor who strolls in into the exam room, doesn't make eye contact, and spends only 30 seconds with me, having obviously already made up his/her mind what the diagnosis is and what the treatment will be based solely on what's in my chart and without the courtesy of allowing me to speak, I "fire" that doctor and find another one. I don't think medical practice should be a "churn and burn" sort of business.
If you don't want to "fire" mom's doctor, then be forceful with your tone of voice the next time you see the doc. If you don't speak up and tell him/her you need more information, the doc is going to assume everything is copacetic. A simple "Doctor, I have some questions I would like you to answer" firmly, and without an apologetic tone might work. You might want to write them down beforehand, so you're not fumbling around trying to "find your words" so to speak.
The doctor works for your mom and for you and should be willing to take whatever time is necessary to explain whatever it is you need to be explained.
For us, it was trial and error in regards to medications, behavior challenges and more. Thankfully, my sister and I both have an excellent (but a bit warped!) sense of humor that more than helps us get through each day. With the help of the doctor, we were finally able to get mom on a great path of meds, keeping hydrated, etc. We also learned that we take each minute, hour, day as it comes and always stay in mom's moment, whatever that may be at the time.
Mom recently fell which precipitated us moving her into a great nursing home. They have a step-down unit in the same facility for when mom needs full care. The staff there -- right down to the cleaning staff! -- are excellent and mom has flourished in their care. She's very content and loves it there (as best we can tell).
Keep doing research and please find a neurologist who has actual hands-on knowledge of dementia-related diseases. And please know that you cannot take care of her all by yourself no matter how much you think you can. Burnout is real and, if you're not healthy and take care of yourself, you won't be able to take care of others. Best wishes to you and big hugs -- it's an awful path for not only our LOs with this dreaded disease, but it also takes an horrendous toll on the caregiver(s).
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
The 36 Hour Day is another great reference type book to keep handy and a good tool to have in your toolbox. The book answers lots of day to day questions that crop up.
Support forums such as this and the one at Alz.org are excellent for sharing your knowledge and learning from others experiences. Teepa Snow videos on YouTube are also excellent as she provides great insight and tips into handling elders with dementia and AD. Don't fuss over what words are used to describe a broken brain either....Alzheimer's, dementia, etc.....the symptoms and behaviors If all similar and are all treated the same, except for maybe which meds are prescribed, if any. My mom only took Ativan for agitation with Sundowning, Wellbutrin for depression, and meds for nerve pain unrelated to dementia. Nothing helps with Memory loss.
Wishing you the best of luck
The doctors here are terribly inadequate it seems to me. We've tried CBD, cannabis, lyrica, essential oils, exercise and Xanax. Nothing but temporary small amount of relief.
Thank you so much for your reply. I just need to know what I'm up against.
There are plenty of books and videos that will help educate you about dementia. One is Teepa Snow videos on YouTube. And forums like this one.
https://www.heartandstroke.ca/stroke/what-is-stroke/vascular-cognitive-impairment
https://www.bcm.edu/healthcare/specialties/neurology/parkinsons-disease-and-movement-disorders/vascular-parkinsonism
Agree.
In fact, I believed dementia was Alzheimer's Disease until it was explained Dementia was an UMBRELLA term: covering many types of dementia - of which Alz is one (most common one).
That Dr Alzheimer sure had good marketing!
Can I stray a bit & ask if Mom is living with you, with others or alone?
This would be so we can offer some practical strategies to help you. In-depth dx or not, avoiding burnout as the primary caregiver should be a top priority.
Regarding Mom's denial - can I add my take: if part of the brain is effected (like a few lights flickering or going off) then the brain cannot 'see' there is any problem.
This denial is actually *lack of insight*. Medical term is 'Anosognosia'.
I will add some links for you if you are interested to read up but basically, if she has lost reasoning power, you will need to be the one making the judgement calls & decisons. For her own safety.
https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm
Is anyone?
What you mention in your profile is a bit on the frightening side if you ask me.
She should not be living alone.
She should not be driving.
Her doctor should have given you and her a written statement to that effect.
With Vascular dementia you never know when there will be another small stroke that could do more damage to areas of her brain that will effect driving, coordination, knowing she left the stove on or the water running. Or a host of other things.
If there is no one that has POA you or someone should become her Guardian. Unless she is cognizant enough when you go to an attorney, if he has a conversation with her and se seems cognizant then they will do POA, but if the attorney feels that she is not cognizant they will not do POA.
My Husband was diagnosed with Alzheimer's but I think he also had Vascular dementia. the decline with Alzheimer's is more gradual in most cases. Vascular dementia can have very sudden declines. My husband went from walking one day to not being able to walk the next. There were other "over night" changes/ declines that he had. So you never know what is going to happen when. It all depends on what part of the brain is effected by the next mini stroke.
I had to resort to this technique with my first child's pediatrician. I'd never known a baby until I had one of my own, so I had to tell him in writing that he needed to assume I knew nothing, because I didn't. He was brusque and in and out so quickly I was often left in tears of frustration.
Fortunately, he took my letter to heart and kept that note at the top of my daughter's chart, and our relationship improved immensely when he slowed down and started to listen rather than dictate.
I think doctors often forget that their patients are on the ground floor of knowledge while they're in the penthouse. They can't remember that they need to start at a very basic level when explaining things. Giving them a head's up and reminding them that you won't be offended if they dumb it down for you is a good tactic.
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